go on disability from work and figure out how to keep myself busy (I'm only 36).
Quit job, move to Raleigh, get on government disability, look for job with progressive ataxia...
What do I do? Are side jobs/under the table jobs enough to close the loophole? I would get disability from work and govt which would amount to 2,000.
I'm afraid I won't find enough to do and if Paul leaves me, I may not have enough to live off of. It's a leap of faith but I am unhappy where I am now.
Work probably hopes I just cut and run for Paul because my job is going no where.
I'm afraid that no one will hire me full time before symptoms really become obvious then I'm in a really bad spot as far as disability/money.
Hi it can be a problem when you are no longer fit to carry on with work. I was a paramedic so being able to work was out of the question, I went into teaching student paramedics until I was no longer able to do that. sadly my partner passed away and I was left on my own my daughters came over to help as much as they could but they do lives of their own as well of their families to care for. the paramedic pension and the lump sum was enough for me to live on, I now also have my senior pension on top of that I only wish I had the health to enjoy it.
I am not sure... 2K doesn't sound like a lot when you consider the fact that apartments go for 800-1K a month. That means 1K per month for incidentials/food etc. I am considering suing my work place for discrimination... I hope to get more money through that by increasing the bottom line under which I go on disability. Keep in mind that I am 36 and have a long time left to live and that's not enough to save for retirement at 65 when money from work stops.
Yes thank you. I plan on rolling back work hours by doing 80/20 (that's how you get on disability through work) then step down to 60/40 then get on disability. For SSDI, I do not think I will have any issues with qualifying/getting approval since... 1. I was on SSI through college because I am deaf, 2. SCA My previous record of being on SSI then getting off of it because I made too much money would only look good. I have already started the process of getting on disability through work. Once I start stepping down, I will qualify for SSDI since I won't be working full time...
Sounds like you have a plan. For me, getting a lawyer was totally unnecessary. I was approved in a few weeks. If you have genetic testing results you will be fine there.
I could probably kept working for another year or so (I am 43). I was also worried about boredom, feeling directionless....However, this hasn't been a problem. You find exercise and lots of ways to occupy yourself.
Hi there...a different perspective....most ataxians on disability would KILL to get $2000 a month. Most get a little more than 1/2 of that. I was self-employed when I decided (not a doctor) that working was no longer a safe option. I was 42 when I took the plunge. I am now 59, and get about $1300 a month. Your perspective has to change. Don't think about finding a job...that will just shortly put you in the same situation you are now.
You can work part time, and make $700 or $800 a month, and it not affect your disability. While that is happening, think about alternative income/Eventually, any job will no longer be an option. Make and sell stuff on ebay or other sites. Turn a hobby into a small business.I occasionally DJ, and print t-shirts. Be creative.
If your relationship with Paul is in jeopardy, it might not be a real relationship (Sorry, just being honest) Room mates are not hard to find, and if you can supplement your $2000, you can do fine on your own. You need to start changing your thinking. Life is different, and you need to change with it. Forget about what WAS, and concentrate on what IS and what WILL BE. Right now your situation is pretty golden in comparison....
The 2K is from work disability and potential SSDI... I just hope it's enough. My relationship with Paul is not in jeopardy. He is in Prague now and talks to me everyday via Skype. Paul is a kind man. Yes, I have looked into alternative sources of income... I do know how to sew/alter so that's an option. I have great taste in clothes so I can shop thrift shops and try to sell on ebay. I told him that I just wanted someone to hold my hand as I'm going through this hell. I've connected with NAF support person in NC so I will meet with them and it's encouraging.
Yes I do not want to be idle at all. :) Paul says I will find a way.
Jodie said:
Sounds like you have a plan. For me, getting a lawyer was totally unnecessary. I was approved in a few weeks. If you have genetic testing results you will be fine there.
I could probably kept working for another year or so (I am 43). I was also worried about boredom, feeling directionless....However, this hasn't been a problem. You find exercise and lots of ways to occupy yourself.
Great support for you here I read..so not really much more for me to say. Only the ONE thing: try to figure out how you WOULD keep yourself busy WHEN at an age you stop working altogether. Lots of people fall in a black hole then. Like work is our only thing in life:) That can't be! There's a life besides work.. so try to fill in with things you enjoy. You say you know how to sew/alter. Start designing then and make those clothes..let your creative mind take over. Two hobbies in one. And if you can sell this on the internet, that would be a surplus and having THREE all at once:):) Good luck, stay positive and focus on the things you CAN do!
And don't go looking for ANOTHER job with your progressive ataxia. It will get you NOwhere and probably worse off.
I wrote a blog on this site last month: idiopathic late-onset cerebellar ataxia.. if you want to hear a bit of my story:)
How do you explain to one of your parents this condition? My mom is not an understanding person at all. She thinks I will just stand and just walk like nothing happened. I don't know how to make it crystal clear to her.
Hi -Regarding your last comment, it’s been a few years since I’ve attempted to educate others one-on-one regarding ataxia as well as another rare illness, and still no dice, unfortunately.
I used to think that it was me, but people who I hardly talk to understood - so I’m not sure if it’s denial or what. Anyway, my newly held philosophy is that of the cliche: you can lead a horse to water, but you can’t force it to drink.
It sounds like it’s somewhat new in your life. Either way, I would still give the awareness and education, though, don’t tie your worth to whether somebody else gets it or not.
Oops - regarding the other part, $2K should be a great amount. Have you made a budget? This might help.
Also, for extra income, should you need it, you might consider seeing where one of your strengths overlaps with one of your talents and/or hobbies and do that part-time from home or with a group who shares the interest and still do SSDI.
my grand mother also don't support me ant did not want to underastand my illness,i know they who don't have ataxia can't understand us,the I think the solution is to not draw attention to those who do not understand us even if they are our family, you have to be always positive and keep smiling
lzaine said:
How do you explain to one of your parents this condition? My mom is not an understanding person at all. She thinks I will just stand and just walk like nothing happened. I don't know how to make it crystal clear to her.